Monday, December 24, 2012

18 years ago today, at about noon, our beautiful daughter, Morgan
Elizabeth Jenkins Coleman, was delivered by C-Section after 22 hours of
labor. Today she has become an adult as
she takes her first steps as an 18 year old.
Today is like many of the other milestones in her life, they mark not
only amazing growth for her, but also changes in the lives of her parents.

The last time Lizy and I had a vacation without minor children
in tow was to a Bed and Breakfast in Hyannis Port on Cape Cod, Massachusetts. She was 6 months pregnant and I had not
transitioned into life as a full time coach.
We were young at 26 and 28, although we felt old and wise for having
waited 5 years since we had married to have children. Little did we realize how the renewed youthful
vigor a child could infuse every moment of our lives.

And at her birth on Christmas Eve 1994, her arrival
transitioned our lives to that of parents.
We were no longer a couple, we were a family, and the heavy mantles of
Mom/Mother/Mommy and Dad/Father/Daddy settled firmly on our shoulders. Well actually I must confess that It took me
a little while to settle into my role, as I would drag Morgan in her car seat
with me to practices and tournaments. I
saw this as baby-sitting and not fatherhood; and would pawn off this task to
any and all who would sit around and coo at the adorable baby while I attended
to the important business of teaching teenagers how to play a game. And at the back of our minds was the thought
that we will not have an empty nest until 2012-13.

Not only am I a complete idiot, but I am also gullible to
the wiles for my daughter, who in short order understood that to spend more
time with me she would either have to become one of daddy’s ‘soccer girls’ or
invite those same young ladies to become her babysitters. So in short order we came to understand that
Morgan’s talents lay in music and not athletics, and that her intuitive understanding
of psychology still puts me to shame.

Over the next three years, Morgan went with us everywhere,
crawling, cruising and walking her way deeper and deeper into our hearts. Six months after she was born she was saying,
‘Mama, mama’ while we sat in a restaurant in Washington DC at a Physical
Therapy conference; and as mommy broke down in tears because her first words
were for her, daddy (always Morgan’s daddy) was slack jawed in amazement at her
precocious nature (six months is early to talk and mama is often the fifth or
sixth word a child learns, mama is more difficult).

14 years ago today, as a 3 year old, she stood in front of
the congregation at our church of the moment and sang ‘Away in a Manger’. Lizy was pregnant with Evan, I was about to
go on shift as a Supervisor at an EMS company, Morgan was amazing and as a
light snow fell outside, it marked our last Christmas as a threesome. Boy, O boy, could she sing.

A year later Morgan was being the best big sister a baby
could have as she showed Evan the ropes of present appreciation and package
disassembly although not necessarily in that order. And in the back of our minds, the empty nest
deadline was moved back an additional 4 years, I at least would be 50; assuming
the sticks we threw out at that time didn’t boomerang back.

Over the ensuing years, Morgan has grown into an amazing
young woman, although the past five years have been a master level course in
how to be the world’s best sister and daughter.
From early in Evan’s fight , Morgan grasped her critical role. She had to treat Evan like nothing was going
on, and yet be ready in an instant to defend him. She must do well in school partly to keep
Evan in his place and mostly so that she would not be an additional burden to
us.

She set aside the normal activities of her childhood by not
clamoring for attention and demands of time or resources so that we could focus
on Evan’s health, treatment and welfare.
Two distinct thoughts on love coincide in the past five years. First is that a child spells LOVE – T. I. M. E. and second is that, “True love is shown
by those that are willing to lay down their life for their brother.”

Morgan sacrificed 5 years of her childhood that Evan might
receive the best we could offer him, five years we can never give back nor can
we fully show our appreciation. And it
was given freely and without fuss. As
she grew in maturity and became a new woman in our midst she did not rebel and
demand freedoms or attention, instead she became both a glue and a buffer that
held us all together and gave us space to vent as needed.

The time since August has been a big transition for all of
us, not the least Morgan who is experiencing all the trials and tribulations of
being a teenager in 4 months. We’ve had
more parent-teacher interaction/meetings/etc. in this last 120 days than the
entirety of her education to date. She
has ‘discovered’ boys and there has been a distinct aroma of teenage hormone
overload. And it has been wonderful to
reengage as her parent, and not as an equal part on a treatment team. In that time, she has also done the college
tours, identified her favorite, applied and been accepted to the University of
North Carolina – Greensboro.

And so we now realize that today Morgan not only reaches the
age of majority, for her life has been filled with life experiences well beyond
her years, but on some level this marks the beginning of our empty-nest. On Christmas Eve, as I sang ,”Hark the Herald
Angels Sing” while driving home as a new father, the concept of empty nest was
the farthest thing from my mind. And now
as I prepare a four course French Cuisine Birthday Dinner for seven, it is the
only thing on my mind.

It seems that only yesterday she fit in the palm of my hand
and we worried about new-born breathing and pooping patterns, and too soon she
will graduate from High School and continue to live a life she has been carving
out for herself with all the tools she has acquired through our time
together. And there is a terrible
underlying fear that she is leaving us behind as she spreads her wings and
flies free from the chaos and mayhem of the nest we raised her in.

God speed our darling, God’s blessings our dearest child,
and know in your heart that no matter where you are, no matter what is going on
in your life, we will always have a place in our nest for you. Happiest 18th Birthday, may there
be many happy returns, and thank you for being the best daughter two parents
could ever have. We love you . . . now
look out world . . . here comes an accomplished and talented young woman ready
to give herself for your betterment.

Saturday, December 22, 2012

Two weeks ago I penned a post entitled “Are You Regular?”
detailing the actions of some amazing men and women from around the Triangle
Area of North Carolina (Raleigh, Durham and Chapel Hill). Today marks 3 months since they put on The
Regulars play for Miracle 2012, and I wanted to pay tribute to +Brian Cornwell,
+Tim Noonan, +Paul Baldasare, +Dino de Costa Pratt, +Ryan Harris, +Alfie Potter
and Sue and Burgess, and . . . and all the
other amazing musicians who pooled their talents together. Let me
not forget the amazing hospitality of The Big Easy and Kevin the General
Manager.

To say it was an emotional event would not do it
justice. It had barely been 30 days
since Evan had lost his fight. An
amazing artist who we had never met had painted a water color of Evan in
happier times; the tears started early and didn’t really stop till we got
home. So many friends showed up at from
so many different areas of our lives; they came from soccer, church, work and
school; they even came from Cary, Raleigh and Chapel Hill, but also from Alaska
and Tennessee. And if you had wanted to
come, but couldn’t find a way to make it happen, I came across some footage. You can link to it here http://youtu.be/GddB7ir2N-Y

The footage is grainy and from a cell phone, the sound is
mono and tinny, and yet it still speaks clearly. In the clip, Paul Baldasare sings the lyrics
taken from Evan’s poem “Life is Like a Road” while Tim Noonan carries the song
on his guitar. Tim and Paul pulled it
together over the course of a week in Tim’s basement studio just for this
event. It was a premiere where the drummer and bassist had never rehearsed, and
yet they were amazing. This song will likely never be played again but it has a
very special place in our hearts.

I suppose since it’s Saturday, I should stop here, but I
have just begun to get my feet on the soapbox; let be segue from people helping
specifically to people demanding action. In the past 10 days we have been
subjected to the horrors of Sandy Hook Elementary School where 20 children
between the ages of 6 and 10 were gunned down in their classrooms along with 6
faculty and staff. The nation has picked
up this shocking event and run with it: Ban assault weapons, put a policeman in
every school, “IF a child throws a rock at another child, we do not hand rocks
to every child”, 26 acts of kindness.
The outpouring of demand for action has been fever pitched.

Lost in the cacophony of hot air and political posturing on
an issue that has no opposition (No one favors shooting kids in school) is the
reality that the parents face: Nothing can bring back their child; nothing can
take the edge off the anger, fear and bewilderment. And now let me grab this debate by the throat
and throttle it. By all known means of
data, more than 1600 children lost their battle with cancer last year. That means that every week of last year 50%
more children died each week from cancer than died in one horrific afternoon in
Connecticut.

That fact should not minimize the tragedy in Connecticut,
but perhaps highlight a better target of our demands for action. And just like the parents of the children at
Sandy Hook Elementary, both of surviving children and those who perished, every
parent of a child dead from cancer cannot understand why their child? why this
way? what good can come from this?

At times like these we should take a page from the playbook
of The Regulars, they may not be doctors, n’lawyers, n’such; but their God
given talent with music can be a source of joy, a center point of conversation
and a useful tool for good in the most challenging of situations. One such group that has been around long
before any of these discussions were begun is Nevus Outreach, Inc. (http://www.nevus.org ) 3 families united by children in trouble
connected via a new media, the internet, set about educating all who they met and
raising awareness about a childhood affliction they were all just coming to
terms with: Nevus.

Nevi (plural for nevus) are commonly referred to as
birthmarks. But in some rare instances,
a birthmark doesn’t stay small, but grows during gestation to be quite
large. In Evan’s case, his covered over
1/3 of his body, with little birthmarks or satellites covering much of the remaining
skin. In other cases, the melanocytes
which form the nevus cover the brain and central nervous system. So little was known only 20 years ago about nevi
that only wives-tales pervaded about diagnosis and prognosis existed in the
medical community.

One of the founding familes +Mark Beckwith, +Kathy Stewart,
& +Megan Stewart remain intimately involved in the organization they helped
found some 17 years ago or so. Mark
continues as the organizations Executive Director and they can count among
their accomplishments: raised awareness; a database of patient specific
information, treatments and outcomes; sponsored research; and international
collaboration of both patient groups and medical providers and investigators.

Nevi are essentially benign, but there are clearly some
triggers that cause malignancies, however the incidence is remarkably low given
the predisposition of the nevi to already be an existing over-proliferation of
cells. That said investigators such as
+Heather Etchevers explore fetal development cell migration, and +Dr. James Barkovitch
looks at MRI evaluations, and Dr. Ash Marghoob at Memorial Sloan Kettering
trail blazed for data base creation; all because of initiations or pushes or
cash support by or from Nevus Outreach.
That is before tissue banks and the Worldwide Registry.

They saw a problem.
Their child was at risk; their three children with a little known
condition with horrific prognosis that seemed to come from the village witch
doctor rather than any scientific method.
Three children became thirty, became 300, became a force to be reckoned
with. The scientific breakthroughs in
diagnostics, prognostics, data gathering, psychology and treatments have been
breathtaking to behold; and yet there is still so much to be done.

And it is with that point I come full circle on this chilly
Saturday morning. Right now as I write,
Tim and Brian from The Regulars are
listening to Christmas Music of a rock n roll variety, while Kathy, Mark and
Megan are likely taking in a more choral version of a similar theme. Heather is playing a duet with her daughter
while her son listens on giving the critiques only a French teenager can make;
and somewhere in Connecticut, someone is taking in the he music of the season
and finding in those harmonies a measure of hope and the stimulus to get
something done.

For something must be done.
Children should not die; whether by guns, drugs, or cancer. But the two constant themes of loving success
are music and collaboration. So I ask
you, who will you sing with tonight? and who is willing to listen to the issues
that truly matter to you? When you find
either of these people be joyed, when you find both in the same person love
them as a lifelong friend.

Friday, December 21, 2012

Each year we send out a letter to update the near and far as to events in our household to those we know both in our past and present. This year we once again shared our story, and to many it was a redundant tale of pain and woe, while to others who have not kept in touch, the news was a harsh slap in the face.

We suppose that there will be many notes and calls of regret about not keeping abreast of events in our lives, and that is unfortunate on many levels. Some time we will share the number of friend requests we received on Facebook in the hours after Evan's death, but now is a time for peace and not anger.

Here then is our Seasonal Note/Christmas Missive/Annual Tidings for 2012. This picture was watermarked behind the words of the letter and were taken at the Children's Inn at NIH in one of his poetic moments.

Raleigh-2012

Never has a Christmas letter been so hard to write as this
one. The temptation to succumb to
procrastination is immense. And yet if
this task is not completed it is possible that it would spell the end of all
substantive writing from our family.

There is no easy way to say or write this line, and with it
there are the memories of the first moments of a new reality and sharing it
with those closest and farthest. August
18, at 5:45 in the morning, Evan, our 13 year old gift from God, was given back
to God as he lost his 5 year battle with cancer. The details of circumstance of his death can
be found within the blog that we kept as we travelled this tortuous road together
with him. (http://e-nevusnotes.blogspot.com)

There is a giant hole in our hearts, we are told that it is
a hole that only God can fill, but frankly we do not believe that; and are not
sure we are interested in a divine intervention if the last one was to take our
son/brother from us. The question “Why?”
is at the forefront of our minds but is not going to be answered this side of
eternity. And the most difficult
aftermath of Evan’s death is not the crisis of faith, but the unanticipated
overwhelming waves of sadness and sorrow that make breathing the next breath a
near impossibility.

If we were able to look back on previous Christmas/New
Year’s missives we suspect that we might find a litany of activities and
accomplishments brimming with optimism and the light that only comes from the
strength of love. Everything has
changed, and nothing has changed. Evan
and Paul got closer and closer as the year progressed and as their relationship
developed under the adversity and pressures of patient and care-giver, so Evan sought
out to build and strengthen the bridges in his life to others and healed
damaged relationships with Morgan and Lizy in a manner of grace and wisdom well
beyond his years.

There were trips and travels throughout the year. There were the usual trips to UNC for
treatment and also for Paul’s interview at the School of Medicine; then there
were the new trips to Bethesda, Maryland and the National Cancer Institute with
side trips to Washington, DC. As the
year wore on and Evan’s ability to travel was diminished, Morgan felt led to
represent the family at the Nevus Outreach Conference in Dallas. She was of course a hit; and her strength,
courage and poise were the source of great pride for mom and daddy.

Halfway through the year as the stress and tension of
fighting a battle that Evan appeared to be losing ideas sprang forward to do
something constructive as a way to inspire Evan, bring him hope and to give an
avenue for creative and constructive energies to be expended: Miracle 2012.
There was a two pronged approach: Construct a place of peace and reflection –
Evan’s Garden; and music concert to celebrate Evan’s life and raise funds to
retire the medical debt associated with 5 years of treatment.

Over 150 people(3 church groups, Hospice volunteers, a
college football team and a soccer team plus all the friends from our own
church, school and work) came and volunteered in the building of Evan’s
Garden. One of the iconic images of the
year is Evan sitting on a gliding loveseat on the back porch as he helped
direct construction while feeding off the hope and living prayers of all the
people who gave of themselves digging, planting, mowing and sweating and
sweating and sweating some more.

On July 28, Miracle 2012: The Concert saw hundreds of people
gather at the Garner Civic Center Auditorium to participate in the concert,
silent and live auctions. It was a
remarkable time of life, and while Evan stayed in the background, he thoroughly
enjoyed the music and felt bathed in the love.
8 weeks later, The Regulars put on a live music event and played Evan’s
favorite music to hundreds of people. As
a result of donations, auctions, and generosity; we were able to retire the
full sum of over $28,000 in medical expenses.
And we were afforded the opportunity to approach our grief on our own
time and terms.

Three weeks later, Evan died. It doesn’t get any easier to share this fact,
it is not something that you can repeat a thousand times and the emotion is any
less sharp. It hurts in a way that words
can never relate, and the resulting attempts by people to try and share began
to feel like a bad sitcom. It is with
the best of intentions that people can say the stupidest most insensitive
words; but while this may be the one time that society says it’s okay to be
rude, it must be remembered that the intention was positive, even when the
execution was poor.

To get away from as much of good intentions as possible we
went to the Outer Banks to a Bed and Breakfast.
It was good to just be away from the hurting for a couple of days, clear
our heads and cry in peace.

Since that time, Morgan has returned to school where she was
the Assistant Director for the Fall play, while starting a new job at the State
Farmer’s Market. This is her senior year
and her senior pictures brought both smiles and tears as Paul moved an upright
piano into a field of tall grass well off the beaten track. The results are
stunning. We have always know she is gorgeous, but the poses were Covergirl
quality.

Paul got right back into the college soccer season and after
a rocky start, the Mount Olive College team went on a 7 game unbeaten streak to
finish the season. They made it to the
second round of the conference tournament, beat a team for the first time in 18
years tied to nationally ranked teams and set themselves up to be better next
year. And of course as soon as the
college season ended, the club teams started up.

Lizy has been back to work since mid-October, and is glad
that she works for such a compassionate organization that has supported her
through this ordeal. In the time away from the workplace, she was able to
finish her sewing/craft room (woman cave), and catch up on her own ‘to be done
later’ list.

Rev. Pat continues to teach at church, while Snoopy - the beagle,
gets older and slower, Shellie -
Morgan’s cat, gets meaner and meaner, and Pixel - Evan’s puppy, is rambunctious
and playful all the time.

This time of joy and peace will have a little less joy in
our home this year, but a greater sense of peace as we reflect on the gift that
was given so precious and fragile, and now is gone until we meet again on the
other side of eternity. For us it is not
so much Merry Christmas, but Christmas; just as we have dropped the greeting,
“How are you?” in favor or “Hello!” Peace and Blessings to you all from the
Coleman’s of Raleigh.

PS. If you are one of the hundreds of volunteers who helped make Evan feel so special in his last few months, or contributed in any way to retiring the medical debt accrued during the past 5 years; we will never be able to show our full appreciation. We always told Evan he was the greatest 'hugger' in the world because of the way he would embrace you with a totality that reflected his full commitment to you at that moment. We would wish that you could have one of those hugs right now, and truly feel his love, it is one of many little Evan-isms that we miss so much.

Thursday, December 20, 2012

Today (12-18) marks four months since Evan’s death, and if
ever there was a day that reminded me that people forget so quickly, it was
today. I suppose my role as chauffer for
a medical appointment was more in line with past times, but the overwhelming
political bovine scatology that has been heaped on my plate these past two days
has been a hard thing to swallow.

I have thrown under the bus in such a manner that after the
bus hit me the first time, some smart alec rider encouraged the driver to back
up over me again just to make sure I was just a bump in the road and not a real
mechanical problem. Then to top it off,
a young friend did the dumbest thing he could possibly do, then act surprised
when he was caught in his idiocy; and then realized his only way out of his
self-created madness was to reach outside his pride filled box and not let go
when his parents pulled him out of his own stink pile.

Oops, I almost forgot; some well-intentioned soul is going
to try and teach a class on coping with grief and wanted to get my input and
feedback on whether it should be done, whether it should be done by him, and if
I thought he was on the right track.
This person also stated that they did not think the lessons would be
well attended. For pity’s sake! Really!

Oh yes, one other detail, my wife called yesterday at
lunchtime as is our normal ritual; and almost asked, “How’s Evan doing?” Unspoken answer – Probably a damn sight
better than any of those of us left behind.
Every morning, I get up and know that he is not there. Each time I walk past his bedroom, I know
that he is not there. I look at
photographs and try to remember all the details associated with it, the colors,
the smells, the temperature, the topics of conversation, the next things we
did, the sound of his voice and his laughter.
Each time I pass the empty piano bench I see him there and remember his
intensity.

By 12-19 all I could think was that no one wants to hear this
pain all over again. There will be
moments when a reader might be entertained (perhaps a poor choice of word) by
the writings of the miserable; especially when that misery is universal
regardless of place or circumstance in the world. If you have ever read Dickens’ Tale of Two
Cities you would recognize the pain of Madame LaFarge. Her pain is the very real and palpable, and
her desire of revenge is her outlet for this feeling of hurt and anger in a
battle of perceived class warfare via the French Revolution. Dickens’ through his works lets us see that
pain is pain, joy is held in all hearts and that one’s station does not change
the intensity of the emotions.

In my parent’s end of the year letter to their family and friends
begins with the opening line from a Tale of Two Cities, “It was the best
of times, it was the worst of times. . .”
And as I marvel at the literary skills of those around me and take in
the craft of weaving words from the likes of Irving, Dickens, Melville and
Shakespeare; I find that my writing should not be a fool’s errand of repetition
of the same message. While I may have
discovered the tone of my literary voice, it is currently tinny and hollow as
if heard through a tin can telephone. But what to do?

Today, again (12-20)I cannot deny that with each passing reference
to Evan, the condolences coupled with the discoveries of things forgotten there
are searing pains. Whether it is the
note in a Christmas Card, an ornament purchased with the best of intentions or
the items being discarded. Those items
had been hoarded and stashed away in the vain hope of divine miracles and/or
medical breakthroughs; the items now to be thrown as rubbish while sifting
through them for the real gems of anguish.
These gems are the clear insights into either memories of Evan or his character.

There was the rough draft of the letter to the LEGO
corporation to sponsor a Mega-build of Jabba the Hut to tour pediatric cancer
hospitals around the country. People
would build the ugly 9’ tall monster over the course of a week, only to have
the patients tear it down as physical representation of the monster inside
their bodies. I will share that letter
on some later date as part of the roll out of the Evan Coleman Foundation

Or the video spoof of me as part of my Father’s Day gift for
this year. In this clip, Evan, clearly
under-weight acts out a ‘typical’ family dinner scene. Evan as me, is in a white tank top, a ‘wife beater’,
trying to engage the children with some off the wall off color humor so as to
get them to laugh. You can watch it here
at http://youtu.be/3elqdt4iwcQ
Look beyond the script and look at the glimmer in his eye, and the music of
laughter in his tone and mannerisms.

Or the crèche scene he made out of modeling clay for me when
he was 4 years old. It is pictured here sitting on the keyboard of his
Alienware laptop.

This pain, these crippling strikes to leg, knee or groin are
not dissimilar to playing in a soccer game where the referee is truly
blind. The opponent for this little game
is the Devil. His minion demons have taken the field with nothing but total
victory on their minds. Some of them
have skill, but most are thugs. Their
concept of victory is not just to win the trophy for the game, my faith; but to
leave me clutching my wounds while trying to gain some comfort and solace as I
roll on the ground in the fetal position.

As the game has gone on I have exerted more effort to regain
my feet, and the attacks have been more penetrating and poignant. But most importantly I have realized that I
am not alone. It does not mean I can
pass my responsibilities onto someone else, and so there are things that I must
do alone; but that does not mean that I am not supported or that I should
approach the game as a lonely soul.

When playing games, whatever the game, there will always be
opponents who are faster, bigger and stronger than you, some might even be
smarter. But if you have the heart to
stand up, the will to fight on and the desire to stay in the game then you must
find a way to connect with those around you.
To draw on their strength when you are down, and to help them, your teammates,
be better at what they are trying to do.
That is the essence of understanding from Psalm 23, you will walk the
Valley by yourself but you are not alone, and recognize that those people you
come to understand as your teammates were not placed randomly in your path.

And so the game goes on, I got kicked in the shin and then
kneed in the groin, but I got back up and helped someone else as I helped
myself. All of this was done by and
through grace and mercy for which I do not consider myself worthy which might
border on humility unless you know me.
To wit, I made dinner for my wife who was under the weather, and
decorated a Christmas Cake over a year in the making. The dinner had its origins as a French
peasant dish, which thanks to the likes of Julia Child became a 2 hour, 6
saucepan challenge. Thankfully, the
final dish, beef bourguignon, was a delicious surprise, although the cooking
aromas had hinted that the finished product would be more than palatable.

I have a friend who is a chef. Dino the Chef has been cooking his way around
the globe for over 20 years. His love of
fusion foods is second to none, and the creativity he possesses in this arena
are not easily surpassed. Fusion cooking
is the art of taking the classic flavors and creations of one gastronomic region
and blending them with the classics of another so as to create a flavor synergy
that causes eyes to roll back in your head upon first taste. Aromas that start the salivation process
needing a dam or at least a towel to stem the flow.

I mention Dino because he is one of my teammates; and
because I do not want to hear his scoffing at my love for the classic traditional
that bring me a comfort when cooking and dining. He would of course never scoff, but my mind
believes he should when I claim to be able to cook. But cook I have claimed to do for the past
several years as we approach Christmas Eve.
Christmas Eve is a very special time in our home as it marks Morgan’s
birthday. And so to set it apart from
the events of the morrow, for the past several years, I have cooked a main course
meal and Lizy has prepared a cheesecake of choice. These are always happy and joyous events in the
kitchen as mom and dad trip over each other in some vain effort to make the day
more special for Morgan. The goal is to
make the day different, to have it stand out and demand recognition on its own
merits. December 24 is Morgan’s Day.

This year she has asked that the meal be French. No more input, that is half the fun for her,
to watch me scramble to make something worthy.
To demonstrate my love for her with some gastronomic delight and out of
the ordinary way fete her day with the blood sweat and tears of working in a
busy kitchen while trying to ensure that everyone gets to church for the
Christmas Eve service.

Enter Dino. Why not
take a tour of the French countryside via the 5 master sauces from which all
French flavor and cooking is developed, or better how about a Vietnamese-French
fusion given the heavy interaction of the cultures through the 1950’s. Did I mention that Dino has an acute sense of
irony, history and political insight that can only have been created from
tasting too many of his own creations.

But the tone was set:
French Countryside Flavors. So as
a lead up to next Monday night, yesterday I set about whipping up a little beef
in wine sauce. Let me say that whatever
angst or whining that may arise from this narrative, no one enters the kitchen
repeatedly who does not love the essence of preparation and teasing the palate
of others. Cooking should be the essence
of joy. And our kitchen is no different.

As the aromas arose, so did the heat in the kitchen. There is the seasoning of floured beef in olive
oil in one pan, while onions are bronzed in butter, new potatoes simmer on a
back burner, while bacon is par boiled in vegetable broth. The aroma of a coking roux is raised in separate
pans of browning flour and caramelizing butter in another, then bacon being
reduced to generate a flavor base for thick cut carrots. Then the spices including fresh Thyme from
Evan’s Garden are introduced with a glass of burgundy wine (One for my wife,
and one for the sauce).

With the kitchen filled with the aromas of cooking, love and
spices, the elements of the stew are placed in a cast iron, flaming orange Le
Creuset covered saucepan and allowed to steep in the oven while the remainder
of the meal was prepared. Garlic
infused baguette was toasted while noodles were brought to the condition of al dente.

It was all done too fast, over too soon. It was delicious, missing ingredients, but
lovingly prepared. The aromas faded so
fast, but the warmth lingered on. And
after a brief respite, there was acknowledgement that it was an introduction to
a week of French tastes and experiences that will culminate in a precursor
birthday. It will be her 18th
and will signal the beginning of our empty nest. Our fledgling will begin to take more and
more flights by herself. Literally in her trip to England and France in late
March, and figuratively as she chooses work over family in the mid holiday trip
to the mountains, and a new life as a college student in August of 2013.

I will save the story of the Christmas Cake to another time
as it is both humorous and poignant for now I have exceeded your reading time
by at least 15 minutes. And 15 minutes too long in the kitchen usually is a
recipe for a burnt offering not a pleasantly palatable dish.

Monday, December 17, 2012

Gun control is the topic of everyone else’s day. Let me point to the families of those who we
all lost on Friday. 27 families woke up
on Saturday morning with one less person in their homes. 20 children’s beds were found empty, still
made up from Friday morning’s post breakfast cleanup by mom’s and dad’s trying
to keep things neat and organized through the busy season. 7 other families woke up knowing that someone
was not in bed either beside them or in their first true homes away from home.

There is no balm for this hurt. There is no plug for the hole. I know that feeling, I hold it every
day. The best description I can muster
is to envision ourselves as ships going through the stormy seas of life. We are like a convoy of ships trying to get ourselves
across oceans for a little respite in ports of call before once again plying
the waves on our never ending sea voyage.
And then one of our boats is sunk, whether by storm, or torpedo, or just
unfortunate design, and we the remaining boats in the convoy are left damaged
from the loss. We now have holes below
our water lines, and we are taking on water.

Sometimes the water flows in through those holes at rates so
fast that we can envision going down like Titanic under the weight and tumult
of the water and waves respectively. But
then we learn that if we turn away from the hole, and pick up speed, the hole
lifts out of the water, and we get a moment or two in which to dry out below
decks. The bilge pumps are always
churning in our lives because our boats are hand crafted and muddled together
from all the bits and pieces of our lives, and so they leak. The leak is sometimes slow, and sometimes
like water through a sieve, but our pumps do not stop in a constant effort to
keep us afloat.

And as the pumps work, and we turn in ever faster circles to
heel the hole out of the water we find that we go nowhere for a while. Who knows how big the hole is? Who knows what
patching materials are available? Who will lend us a carpenter to shore up the
damage? Whatever the delays to repair,
eventually we will try again to continue our journey with a little less
understanding of the proper shape for our new convoy, because we never travel
alone. And we will once again be hit by
rogue waves or sudden squalls, and will once again find the leak unbearable, be
unable to continue forward and only by running in circles will we gain the time
for repair.

And repair we must.
The world must know about the sunken vessel we left behind, the world
needs to incorporate the knowledge of our loss so that it does not happen again
to some other ship in some other convoy.
But no matter the cause of the hole in our hull, whether a chronic
problem of rust or running aground on a coral reef, we are still afloat. The boat that represents our loved ones do
not float anymore, they litter the seabed screaming for us to continue our
journey to share the tale of their loss that others might take heed and do
something beyond just talking about what might have been.

A Canadian friend of mine would tell me, “If ‘if’s’and ‘but’s’
were candy and nuts, we’d all be happy children” I cannot tell you why children
die, I cannot tell you they have to die; but I can tell you that they do
die. And when they die, the devastation
in the wake of their loss is mind numbing to its size and wicked nature of the
barbs left behind that seem to just rip out flesh upon contact. And yet the simple view on what could/should
have been done is like looking into that bowl of Christmas treats.

I should be careful here, not more than an hour ago, I challenged
a friend with a similar vein of thought, in that identifying the problem is
only half the battle, defining and prioritizing a solution and then
implementing in such a way as to cut through the waves of opposition is the
tougher side of the argument.

First things first.
Life is not a spectator sport. I
thought that I had missed out on so much over the past five years of caring for
Evan. What I missed were the mind
numbing pieces of a life driven by entertainment rather than those pieces that
equated actually living. I have a friend
who at 20 years old is the antithesis of David Lanza, and yet he keeps to himself
because he can barely tolerate the lack of substance in the goals and interests
of his generation. He doesn’t even have
a cell phone. His idea of a good time is
to go hiking in the woods with his dad.
He works hard at his job, works harder at school (academics are not his
strong suite), and lives life to the fullest in the moment. Carpe Diem!

Secondly, life is not a journey we take alone. While it is essential that we strengthen the
family bond of instruction between parent and child, denial of freedom in
pursuit of security and safety is a blind and fruitless quest. Communication and the requisite skills
associated with this term should be the forefront and backbone of all parent
child relationships; because when we do get into real-world situations, being
able to look someone else in the eye is not a matter of defiance or arrogance
when trained correctly, but they are a sign of intrigue and respect.

I have read somewhere recently that there is a thought that
altruism is an ancestral trait as determined by anthropologists. BS flag on that one. There is work within subsets of humanity to
establish a greater hegemony over other groups.
The final step in a solution driven world is to seek to make the person
next to you look better, to achieve more, to be happier or better off for
having known you. The person next to you
should never be objectified in some manner to make them a stepping stool for
your rise to the next rung on your ladder.
They are there to be given a boost by you, a leg up, and life ring
receiver so that they might succeed more quickly for having known you than if
they had not. But for that to happen you
must walk in the world with your eyes open not to the opportunities that are
there just for you, but the opportunities for others that they might not see.

And so my three step approach to getting better, to fill the
holes beneath the water line is three steps true: 1. Get in the game 2. Communicate with your teammates 3. Make the players around you better.

Sunday, December 16, 2012

I normally do not write on Sundays. Whether in deference to
some unwritten personal blue law, the need for a break or out of love and
appreciation for a God I do not understand nor care to converse with at the moment;
is in effect immaterial to the fact. I
generally do not write on Sundays. Then
Thursday happened, then Friday and finally yesterday; and when I ultimately lay
my head to pillow at 3:30 this morning it was too late to write.

In this kaleidoscope of events of the past days, it is Friday
that will have the most lasting memory for most readers. Friday was Sandy Hook Elementary. A school name not unlike Columbine, Virginia
Tech or The University of Texas. 20
children and 6 adults perished in that awful event, and 18 hours earlier 22
children and one adult were slashed by a knife wielding man at an elementary
school in China. No matter the moral
outrage, no matter the misguided attempts at fixing a ‘broken’ society, what
commonalities are present in the two men who half a world away take out their
personal insanities upon children.

I do not have the answer, but I would like to point a finger
like the hundreds and thousands of people who have vented into this debate
using the shock and disgust of this situation to forward their own personal
agendas to improve society. I do not
point fingers at legislators, the NRA, gun manufacturers, the Supreme Court or
any other authority or person of authority in this matter. In an era of blame shifting and finger
pointing recriminations, let us look in the mirror. Let us legislate a minimum of 1 hour
conversation with neighbors a day, never the same neighbor, you can only talk to
the same person as part of this mandate once per month.

The details beyond this would be reasonable, enforcement
would not be funded nor demanded, except that once a year on the date of
anniversary, at 9a, noon, 3p and 6p and 9p; if you owned a transmission source
(radio, TV – of any kind, satellite) you would have read off the location and
names of the victims of any mass killing in the country. Perhaps then we would not lose sight that a
sound bite world and isolation of individuals behind electronic camouflage is
not a society but a haven for the insane among us.

As devastating as Friday was to us all, and for the lifelong
hauntings of those parents and children in the vicinity of Sandy Hook
elementary; for the rest of us life will continue forward with nary a look back
on this event in the coming weeks and months.
While this tragedy was developing in Connecticut, I was preparing for an
indoor soccer (actually futsal) tournament at the college where I work. A position of some envy for some, if not
many, but a position I would not have if it were not for the 4 Little Maids
from school.

NB. For the sake of
information, my parents thrust upon me as a child a love for the low theatre of
Gilbert and Sullivan who wrote a wonderful piece of music for their comic opera
The Mikado entitled Three Little Maids from School. Here is a link to a great performance from
Australia http://www.youtube.com/watch?v=VyEJZ9yODB8

It was winter 1999 or 2000 when I was approached by Kim Munro
nee Murphy, Megan Lyons nee Karchon, Kristiana Dixon and Sarah Barbu . Now to put this in perspective. I had coached Kim and Sarah for a couple of
years and Kim’s dad was my assistant. I
had also coached against Kristi for 2 years before coaching her for a year and
had coached her older brother. Megan had
been a family friend for years going back to the times I had coached her
brother in High School, and in the highest honor a coach could receive she had
attended the high school where I coached just to have had the experience before
she began attending the school that would be better for her long term
education.

A that time they were all attending Notre Dame Preparatory
High School in Pontiac, Michigan and were deeply concerned that they were not
getting the best preseason prep work from their coaches. I was not coaching at the time, having suffered
a major head injury in 1998 and walking away from the sport in the spring of
1999 after Evan was born. I will never
know if they were really concerned about what was coming in the Spring or if
they were throwing me a lifeline; but they would not be denied.

At a time when I did not believe in myself, they believed in
me; after the countless lessons on the soccer field about picking yourself up
and getting on with the job, they taught me to take my own medicine. While I
struggled with the techniques, afraid of the ball hitting my head, and having
less than adequate balance with my left leg; I came to realize that the knowledge
of the game and the psychology of the player were not dependent on whether I
could continue to play but whether I was willing to risk engaging myself with players.

I have never forgotten those sessions in the racquet ball
courts, the renewed laughter and life enjoyed with players and friends. I have remained in touch with 3 of the four
girls, who are now grown women living vibrant lives of their own. I know of 2 marriages and four children to
date; and my heart sings for joy with each interaction and announcement. Each Christmas we exchange cards, and over
the long journey with Evan they reached out to share a hug or a note of
encouragement to him so many times that I lost count.

And this year has been different and yet the same. Thursday evening after I had spent the
afternoon at the college, then spent three hours on a floodlit practice field
at an Air Force Base then driven an hour home, there was a package on the
kitchen table. There is nothing unusual
about getting home at 11 pm and finding packages, letters, cards and bills
strewn over the central location for distribution (as Fedex has the Memphis
sorting Hub, we enjoy the kitchen table)
But this package was from Kim Munro.

I have on the shelves in my office a picture of a 15 year
old Kim holding a trophy after the last season I coached her, the season I
suffered my head injury. She looks so
young, and her smile just lights up the picture. I as usual do not look like a soccer coach but
more like a lumberjack. And that picture
sits there to remind me of the influence and impact that coaching can have on a
young life.

Inside the package was an assortment of thoughtful gifts of
no appreciable value to anyone but us.
This is the gold bullion of friendship love and respect. To begin with or end with the dozen plus homemade
chocolate chip cookies that is the question? Or Lil’ Duck’s twin brother rescued
from a market in the days after Evan’s death,
or the ‘e’ necklace for Morgan, the candle of light and love for us all
or the cranberry hand soap.

This package was not about the stuff but about the real
values in the strength of relationships and positive influences upon one another. If I influenced Kim’s confidence by changing
her position from defender to forward; then she and her cohorts most definitely
influenced my belief and confidence that I could coach, and that coaching was
so much more than kicking a ball about.
The package was a touch of nostalgia, a hug of comfort and patterned
after the depth of love that true friendships hold.

Kim will undoubtedly read this blushing like the young
school girl she was, amazing wife and daughter she is, and the strongest mom a
child could ever have, don’t you forget this Mason Munro (When your able to
read this). But as she will relate to the
memories I pointed to, so too will Megan and Kristi.

While I document Kim in the above paragraphs, please do not
think that the love we have experienced from anyone else is any less meaningful
or sincere but at a time when the nation looks at the broken relationships that
lead to the pain and anguish so readily reported on the news; I wanted to
detail how the relationships of some are powerfully infused with love and
respect.

Kristi is deep into her graduate level work in Criminal
Justice at San Diego State; and she sent us music to comfort our souls as she
had received comfort at a time of need in her own life. And Megan is in the throes of joy and agony
of being a wife to a wonderful man, while running a farm while raising 3
children, including a new born in Up State New York. And through it all there
is almost weekly a kind word of love, support and remembrance.

Their love is more precious than the Crown Jewels of
England; their friendship more valuable than all the tea in China. Their influence and impact on my life is simple
– Without it, I would not be coaching today.
I would have shriveled up and given up on life as I felt life had given
up on me. So in retrospect I am not sure
if they are the mischievous Three Little Maids or the Archangels of Note Dame.

Saturday was soccer, soccer, soccer; and as much as I love
it, I was very happy to put my head to pillow this morning.

Thursday, December 13, 2012

I mentioned to a friend that I think of myself as a Blues
writer without the music, he just looked at me and said I was a Blues writer,
the music is just the sound of the emotions I convey from my experiences. I am not really sure what that all means or
where it leads except down a memory lane filled with potholes, branches
reaching out from the side of narrow streets and too many blind corners to
count ; all of this occurring in the middle of a rain shower at dusk, while the
headlights are dim and the wipers need replacing.

It is of course nostalgia for times past seen only through
the tears of today. The source of pain
is too close to wipe away the tears and expect to see sunshine, and so we set
about preparing for a season in which our joy has been tempered at least, and fun
sucked to a dry raisin of the bountiful goodness that is supposed to fill this
otherwise miserable time of the year.
For a moment, let me drag each of you in the Northern hemisphere into my
own personal understanding of wintertime and its relationship to the holidays.

First let us presume that Chanukah and Kwanza are cultural
rebellions against the previously dominant themes of Christianity and the arrival
of the Christ child to save all humanity from itself. That Chanukah is at best a minor holy holiday
in the Jewish Faith, and that Kwanza is a time of remembrance of the roots of origin
(West African Diaspora) initiated in 1966 for the African American community in
the United States.

Let us also presume to acknowledge the obvious reality that
Christmas is a far greater commercial celebration that a religious one; and
many in the Christian community rail with the cry, “Christ is the reason for the
season!” I am throwing the big, yellow, BS flag on that play. This season of partying was initiated by
animistic cultures across the Northern hemisphere in deference to the shortest
amount of daylight in a given day during the year, the Winter Solstice.

As ‘civilization’ recognized that beverages left to their own
devices will ferment, alcohol was added to the mix and hearts and bellies were
warmed as noses got colder. All the
signs of life that would come in the Spring were feted and celebrated by one
and all, especially those plants that were ever-green because they never
stopped showing the signs of life. But
why celebrate the shortest day? Why all the hullabaloo? Because everyone, except the few immune to
the effects, suffered from late Fall to early Spring. Seasonal Affective Disorder (SAD) is not just
some creation of psychologists and psychiatrists of the 21st
century.

If you had to sit around a campfire to fend off the cold wet
weather of the Northern latitudes through long winter nights, how would you
feel? If sunshine did not bring warmth
but a foreboding that the night was to be colder than the brass bra of local
witch, you would not consider happy to be one of your normal states of existence.

And so some bright eyed person got it in their head to have
a celebration of the shortest day because that would be the foreshadowing of
the warmth of spring and all the nature joy and happiness that green grass,
pretty flowers and warm rains. And how
did people 2000 years ago celebrate: Music, Food, and Adult Beverages. For a brief moment, the reality that there was
limited shelter, that the term ‘not having a pot to pee in” meant you had to
brave the winter storms to relieve yourself outside, that weather proof was not
a term yet invented; would all have been forgotten.

Animists/Heathens/Pagans or anyone not associated with the religion
of the authorities celebrated because there were no constraints. Christian leaders sensing that animists would
get the upper hand for a time of the year decided to hijack the holiday by
conjuring a date for the birth of Christ in close proximity to the pagan time
of worship. This is a thing to be celebrated
– see music, food and appropriate amounts of grog, et al., and the symbols of
the coming life of spring were ‘clearly’ pointing to the everlasting life to be
found in Christ.

So now that I have had a chance to drop a cold shovel full
of wet Michigan snow on your parade for joy and happy times at this season; let
me share the concept of nostalgia. The
look back in time to the ‘good-ol-days’ of yore through misty glasses or frost
tinted windows is not always a happy affair.
I am not referencing the looks and sensation of contemplation of an
Ebenezer Scrooge upon his meeting with the Ghost of Christmas Past. I am talking about the sense of standing on
the cliff of an abyss that seems as wide and deep as the Grand Canyon but
without the light or color. It is just a
great big black maw of a hole that threatens to reach up and grab you by the
throat and pull you in.

We are not alone at this time, and this feeling is
singularly not single, but universal for all those people who have to look back
to the happy times in the presence of companions who are no longer here. Whether it is mother or father, dog or cat,
husband or wife, or in our case the empty chair at a table or a holiday
stocking that will have no recipient this year.
The mist and frost of pains of glass looking from the warmth of today
onto warmer years in the past is replaced with the tears of pain as we each try
to huddle through the emotional winter of this year.

Do not hold your celebration on account of this rendering,
life does continue and the necessity of celebrating the future Springs in our
lives is essential for getting through the winter. But when the chance arises be there to lend a
compassionate ear, donate a shoulder to cry upon, and perhaps encourage another’s
life with your presence and not your words.

Tuesday, December 11, 2012

Triggers: Those things that foreseen or unseen come unbidden and in an
instant render my face the appearance of gargoyle worthy of the flying
buttresses of Notre Dame (The cathedral in Paris, not the college in South
Bend, IN)

Yesterday I opened a Christmas Card, and out fell a short
note.You always know the people who
write you cards: the friends, the neighbors, the family and often enough the
insurance agent or employer.They bring
the season’s greetings, the Happy Holidays or Happy New Years and sometimes
even Merry Christmas.

Of course those sentiments fall on the broken hearts of our
family that bravely beat on in a time passing rhythym that marks the day in and
day out of this period of anticipation.It is so customary for phone calls, like cards and letters, to end with
a seasonal send-off that rings hollow in our heads and then falls like a marble
on broken glass.Each barefoot step on
that glass is a pane.But of course
those aren’t the triggers, those are the anticipated, the tolerated; the things
known to be shared with the best of intentions but said without thought,
feeling or compassion.

How is our season to be Merry or Happy, when the littlest
one who we relied upon for his Joy is not here to bring smiles or initiate laughter?We get that the season is one for Joy and
Peace and Hope and Love; but these are experienced in a completely different
way by us this year.As we fend off the
inanity of thoughtless repetition and seek to engage our fellow humanity in
celebrating the life we get to live; we take a moment here and there to reminisce
a time in the past when we were more whole, more complete, and more alive.

There are fond memories of loving times and in those
moments, amidst the surreal entertainments of our minds that this is still just
a bad joke, a nightmare, or a negative alternate reality all congeal and take
hold of our mind in a moment of vulnerability that can only be imagined as the thoughts
of a deer as it stares into the headlights of it clearly shortened future.The sadness is like being taken to a place of
utter desolation , a wasteland of loss and brokenness that once held all the
love and life of the world.Here in this
place we are vulnerable.

Our hearts in this desert are like thimbles that hold a
lifetimes allowance of water, who we are has shriveled up into a fetal position
of survival holding onto this thimble of life.And then comes the trigger, a trip over a blade of grass, or the casual
bump of an elbow by the passing of a stranger.The disruption from successful survival mode to the desperation of a
spilled thimbleful of life appears in a moment to be a catastrophic and
insurmountable obstacle.A weight so
heavy, that succumbing and fading into the burying sand seems more preferable
than continuing to move forward.

I had a friend in college who told me the most incredible
story that until recently I could not believe.He would spend his summers as a park ranger at a Michigan State Park
wherehis primary responsibility was to
pick up trash bags from the beach and toss them into the bucket of a massive industrial
front end loader.You know, big as a
house, bright yellow, bucket the size of a VW, and tires that were 8-10ft
tall.The beast of a machine would articulate
in the middle like a dragon rounding on its tail.My friend told me of a time when he went out
of the view of the driver and suddenly found himself flat on his back as the
front end loader drove right over him.It compressed him into the sand and he recounted how he thought he was
going to die until he just relaxed and let events take care of itself.

And this is what triggers are like, a monstrous mechanical
being that is too loud for any scream to be heard, a foot twisted and caught
under the unstoppable driving force of the oversized wheels, and then the
compression of mind and heart by 15 tons of angry steel.

And so it was this simple note (of warning, kindness and remembrance)that was for me a massive industrial Tonka
Toy of emotional destruction.The note
was from a mom, a mom who had lost her child, a child robbed from family, a
child who was a husband and father, all gone because of cancer.And the note, 18 years after the loss of the
child held insights into what is yet to come.The big yellow beast does not stop, but as it rolls on and on, but we do not have to be squashed, even when we
might want that to happen. And while the hole doesn’t get patched and it never
gets better, it doesn’t have to get bigger.

Civil discourse is only possible when a variety of positions on a subject are able to be shared without editing. The following is a rebutal of "The Fog" It is penned by a person deeply familiar with the FDA and the pharmaceutical industry. It addresses a number of issues with greater clarity than was originally afforded and presents a clearly different yet not incongruous angle to the issues covered in "The Fog"

It is unfortunate that your rant against the
pharmaceutical industry does not pass the “Four-Way Test.”

First, your description of the marketing of thalidomide
conflicts with history.“Fifty years
ago, the vigilance of FDA medical officer Dr. Frances Kelsey prevented a public
health tragedy of enormous proportion by ensuring that the sedative thalidomide
was never approved in the United States.As many remember, in the early 1960’s, reports were coming in from around
the world of countless women who were giving birth to children with extremely
deformed limbs and other severe birth defects.They had taken thalidomide.Although it was being used in many countries, Dr. Kelsey discovered that
it hadn’t even been tested on pregnant animals.” 1

It was only in 1962 that Congress enacted the
Kefauver-Harris amendments to the Federal Food, Drug and Cosmetic Act.Manufacturers had to prove that a drug was
not only safe, but also effective.Approvals had to be based on sound science.Companies had to monitor safety reports that
emerged postmarket and adhere to good manufacturing practices that would lead to
consistently safe products.

Further, in 1998 the FDA approved thalidomide’s use in
the treatment of erythema nodosum leprosum, after it was discovered by individual researchers in Brazil and
Israel to be effective in the treatment of this complication of leprosy.Because of thalidomide’s potential for
causing birth defects, the drug may be distributed only under tightly controlled
conditions.

Secondly, “[F]ew health-and-safety
statutes enacted during the last three decades have been as heavily criticized
as the Food and Drug Act Amendments of 1962. This legislation, a response
to public outrage about the distribution of Thalidomide to pregnant women, made
it more expensive and time-consuming for new pharmaceutical products to be
approved for sale in the United States. Numerous studies have demonstrated that
the 1962 statute, far from safeguarding the health of Americans, has
actually impaired it by denying them access to drugs available elsewhere. Yet
until recently, the amendments’ critics had virtually no political
influence. The pharmaceutical industry lobbied for reforming the
drug-approval process, but its efforts were thwarted by Ralph Nader’s Public
Citizen Health Research Croup and its influential liberal Democratic allies in
Congress--all of whom opposed any relaxation of the strict standards for the
approval of new drugs. Over the last two years, however, the polities of
American drug regulation has been transformed. As a result of the AIDS crisis,
for the first time the Food and Drug Administration (FDA) is being challenged
politically by a group of articulate and well- organized people who want to
facilitate the approval of new drugs. Organizations defending homosexual rights
now criticize the FDA on grounds remarkably similar to those of conservatives in
the Wall Street Journal and of businessmen in the publications of the
Pharmaceutical Manufacturers Association (PMA). Because of the political
mobilization of potential consumers of currently unavailable drugs, the
advocates of strict drug-approval standards now find themselves on the defensive
for the first time in three decades.

In response to pressures from this
new constituency, in 1987 the FDA agreed to modify its usual drug-approval
procedures in order to make at least one drug available for the treatment of
AIDS.Despite evidence that it was
highly toxic, AZT was approved for the treatment of AIDS in only eighteen
months, faster than any other drug in FDA history. The agency spent $600,000 to
speed up the approval process. Yet its
action failed to mollify the homosexual community. Larry Kramer, a founder of
the Gay Men’s Health Crisis, the largest self-help organization for AIDS
patients in the United States, charged that “there is no question on the part of
anyone fighting AIDS that the FDA consists of the single most incomprehensible
bottleneck in American bureaucratic history--one that is actually prolonging the
roll call of death.” Ben Schatz,
director of the AIDS Civil Rights Project of the National Gay Rights Advocates
(a California public-interest law firm), contended that “the FDA is conducting
business as usual when they should be waging war.” 2

Thirdly, the pharmaceutical companies are not alone
in being driven by the “profit motive.”While each research-based
company would like to have the next “blockbuster” drug, it continues to provide
products which improve health and prolong life.As Jon Coleman, Ph.D., points
out, “true sustainability involves doing more good, not doing less
bad.”

Monday, December 10, 2012

There is a thick blanket of fog covering the Triangle area
of North Carolina this morning. Its
murky depths and light refusing aspect are a mirror on my soul as I seek to
apply Evan’s lessons to living today.
The candle lit last night as part of the worldwide remembrance of
children felled by cancer is long extinguished, and like the flame not
flickering so our own hearts falter. And
against this backdrop of potentially overwhelming depression I awake to this
heavy fog that seems to foreshadow the lack of vision and leadership that has
socked in the political leadership in Washington and Raleigh alike.

Fog forms when cold air and hot air come together in a humid
environment. The greater the temperature
difference coupled with higher humidity results in the thickest fog. In
political arenas, the analogy would reference the distance between the central
characters in a debate and the humidity would be equated to the size of the
money pile being discussed. The future is always a little murky when two sides
start from different points of view, and the more difficult for the sunlight of
consensus to breakthrough. It is I
suppose a case of the right hand not knowing what the left hand is doing.

Of course consensus is gained by communication, the process
of give and take, often involving taking the time to listen twice as much as
speaking. This is of course something
that is happening less and less in the seats of government all over the world. And
so the entire world is faced with asking the underlying question that is like
the 400lb gorilla in the room: What is the role of government in our lives?

This is not a call to anarchy, although anarchy is one of
the possible outcomes of a failure to govern.
Nor is it to advocate for anything at the other end of the political spectrum
such as dictatorships whether benevolent or not. It really is as fundamental as
to ask the question: What is government supposed to do?

Is government to protect us? Is it to keep us safe from each
other? Is it to ensure that we are all happy?
If these questions can be answered, they should be. And the answers should lead to consensus of
governmental function. The challenge to
successful communications is our own sense of entitlement. But the essence of
government is to make laws, enforce the laws and adjudicate the laws; with an
understanding that every law written is some form of ‘rights’ entitlement.

We are entitled to the defense of the country and the
upholding of the constitution upon which it was created. We are entitled to be able to live life
seeking out the opportunities that document says we are afforded: life, liberty
and the pursuit of happiness. Along the
way these constitutional rights have been codified by the making of laws. We have laws which prohibit murder,
kidnapping and robbery. We have built
roads to facilitate transportation of goods and people which enables
commerce. And we have passed laws to
ensure that our food and medicines are safe to use in light of cost cutting
measures that maximized profits.

In an effort to ensure that a reasonable profit is made from
ingenuity and investment, patent laws grant competition free production for a
limited amount of time. And here in lies
the catch 22 of laws made within a republic where the core values of individual
rights protection clashes with the best interests of the civil community. So in summation legislative sections of governments
make laws to enshrine rights, the executive branch is charged with enforcing
those laws (which due to the size and scope of the laws entails an ever-growing
bureaucracy) and the judicial branch is required to adjudicate the executive
implementation of the law whether by individual v individual, society v individual
or any section or group held within that spectrum. The gist here is that the right hand and the
left hand are similar in their desire for protection but also often wants to
gain the upper hand.

For the sake of this essay I shall use a very crude analysis
of the FDA as a case study for the points raised above. The Food and Drug Administration (FDA) is a
bureaucratic entity tasked with the executive administration of the laws
designed for the protection of our health and welfare in relation to certain
foods, not all foods or ingested products.
In the Federal Hierarchy it reports to the Department of Health and
Human Services (DHHS). At this hierarchical
level of reporting to DHHS, FDA is adjacent to the National Institute of Health
(NIH), Substance Abuse and Mental Health Services (SAMHSA), Health Resource and
Service Administration (HRSA), Center for Disease Control (CDC) and the Health
Care Financing Administration (HCFA) among others.

So under the DHHS umbrella the competing mouths to be heard
and fed include Medicare, Medicaid, Health Care Reform, Infectious disease containment,
substance abuse, mental health along with the oversight of certain food additives,
medications and medical devices. As un-
or underinsured individuals fight for government coverage for the medical
services available in one hand, on the other is an agency tasked to approving
medicines for usage by the general population that are subjected to regulatory
oversight that is used to ensure efficacy.
These same protective measures drive the cost of the medicines up while
the time to conform cuts into market time at profitability.

There is a complication in the right hand left hand analogy
at this point. Drug companies are owned
by individuals and the profit motive is driven by the money managers for those individuals;
on the other side of the equation are the people who stand to benefit from the medicines
who the FDA attempts to protect.

Let’s take a look at one specific drug that was rushed to
market in the late 1950’s Thalidomide.
It was intended as a sleeping pill, but had tremendous positive results
in an off label application of suppressing morning sickness. Off label use of medications by doctors is a
common practice where the ‘side’ effects
of medicines are helpful to patients in certain situations.

And through careful monitoring patients are able to benefit
from this polyeffective processes.
(Ibuprofen, Aspirin and Aleve are all NSAIDS and they have a variety of
different mechanisms of action that among other things reduce pain,
inflammation and fevers to varying degrees) As medi cations continue a review
process, the FDA can move to allow doctor only prescription to an over-the-counter
status. But sometimes the pressures of
success combined with inadequate trials result in medications reaching the
market before they have been adequately evaluated.

In the case of Thalidomide, the teratogenic (a term used to
describe the genetic disruption that a fetus may undergo without necessarily resulting
in a miscarriage) effects of the medication resulted in hundreds of birth defects,
because the drug was so widely prescribed off label without appropriate
research. It was only in the market for
4 years, but became the poster child for future testing prior to market
approval. It has recently been
reintroduced to the research field as a possible tool against certain
autoimmune diseases and cancers.

But one of the most shocking points was brought to light in
2000 when it was determined that only one of the variants of Thalidomide was
teratogenic, the S version or left handed molecule was able to insert itself
into the purine groove of the fetal DNA causing DNA replication errors.

It is now time for a little background on pharmaceuticals. Drugs
are made of strings of carbon skeletons (organic chemistry), and as they are formed
there appears no difference in the physical properties of the drug where a
50-50 mixture of a drugs right and left hand variants. The determining factor is called a chiral
center and results in either an R or S variant.
Typically there are no steps to ensure just one or the other form and the
resulting blend is called a racemic mixture.

Racemic mixtures only exist in synthetic organic molecules. Nature only produces S or left handed
variants. It is why DNA only twists one
way. It also creates lock and key mechanism’s
with the synthetic variants of a racemic mixture of a drug. Unless there is an overriding need to isolate
just one variant over another, the economics of production dictate a racemic
mixture.

The second shocking point was that Thalidomide was never
licensed for use in the United States; however, the distribution of millions of
pills to US doctors was facilitated as part of a ‘widespread’ unreported study
by the manufacturer. But the fallout has
been a tightening of regulations and less profitable time in the US market
before patent protection runs out.

The production of a drug requires immense amounts of effort
and resources, but once it has been initially synthesized, a drug company will
seek patent protection and begin the process of clinical trials to bring a drug
to market. In 1957, Thalidomide enjoyed less than a year of clinical trials and
was afforded 20 years of patent protection.

Today, the safest drugs still undergo at least an 8 year
wait to approved licensing and release for use.
While the costs have risen dramatically, the profits have potentially
been driven down, all while the pressures on performance are driven by a board
room stocked with people like you and me who are looking to maximized our
retirement holdings.

But before you feel too guilty, there is also an unsavory leadership
trend and a generic reality to address.
Many in the upper echelons of the major pharma manufacturers have sought
to extend their profits by buying off the generic manufacturers asking them to
hold off on generic production for a couple of years. The costs of the drug to recipients is a part
of the profit line pricing of any drug.
Given X costs to bring a drug to market, an expected use by Y patients,
and a minimum required profit of Z, a price is set to offset R&D costs –
perhaps of several drugs since the success to failure rate can be quite high.
So big pharma makes more money by buying off generic manufacturers – this is a
practice now under investigation by the Federal government, but the practice has
been going on for years.

And then there is the status of generic drugs vs name
brand. Remember the whole RS deal with the
chiral centers and the same physical characteristics of organic chemistry
above. This is the definition of a
generic drug according to the FDA:

A generic drug
is identical -- or bioequivalent -- to a brand name drug in dosage form,
safety, strength, route of administration, quality, performance characteristics
and intended use. Although generic drugs are chemically identical to their
branded counterparts, they are typically sold at substantial discounts from the
branded price. According to the Congressional Budget Office, generic drugs save
consumers an estimated $8 to $10 billion a year at retail pharmacies. Even more
billions are saved when hospitals use generics.

But what if the original manufacturer has isolated a
production technique for R or S variants in greater or lesser quanity, and what
if the process uses different ingredients to reach a similar
characteristic. For some people this
will not matter, but for for some others this might spell the difference
between health and illness or between life and death.

I am sorry for winding a chemistry lesson into a civics
lesson into pharmaceutical reform, but the intertwining of all these elements
is found in the need to have a mutual respect for one another that we cannot
codify into laws as much as we should seek to live a more compassionate life
toward each other. The best example I
have ever seen of this principle in action is the Rotary International Four-Way
Test

The Four-Way Test

The test, which has been translated into more
than 100 languages, asks the following questions:

Of the things we think, say or do

1.Is it the TRUTH?

2.Is it FAIR to all
concerned?

3.Will it build GOODWILL
and BETTER FRIENDSHIPS?

4.Will it be BENEFICIAL
to all concerned?

I am unable to put a life statement into better words. Now if the politicians who purport to lead us
would start to try and live these ideals out and seek to not uplift their constituents
with bribes and pride but with education and relationships, we might find ourselves
walking in fields of barley instead of toward a cliff.

As you each engage the variety of ideas here we might start
a dialogue on one or more of the rich veins of interest and together we might
find common ground and common purpose.

I know this meal is the size of an elephant, but if you put your fork in your left hand and knife in the right, together we might polish this off with a few of our friends.